Yesterday's Gastro Visit

[MaggieRedwings]

Morning All,

Well it was quite a visit. Asked how I had been doing and I told him about the vertigo and he immediately said well that's it for the Entocort. Shocked me said I take 3 meds all with dizzy side effects and an ear doc telling me its the ear, so why the immediate stop of entocort. He said well you need to stop since it is a steriod to which I said only 10% and there is absolutely no way. Talked about Colosol (I think) a tablet that I could try and I said Entocort or new doctor. I am going to do 3 mg every other day as I have been doing and if it needs to be upped instead of having all water D, then it will be. He is a great doc through this but his next statement floored me. He said he could not understand why after the number of years I have had CC that it has not gone away. Almost everyone who has it usually is "cured" after a good regimine of meds and they have no reoccureneces. I was shocked and told him that it might go into remission but never goes away per se.

I also told him regardless of test results that celiac disease is lurking with me and all of the indicators are there.

We left it as I would see him in 6 months and not before and would continue Entocort. Even asked me if I wanted a new script but mine is good to August.

Just very disappointed in a doc that I thought was more up on it.

Love, Maggie

[Mars]

Sorry for the frustration Mags - I seem to be having the same results with all the docs I've seen this week. I KNOW that there are problems and need something to stop the symptoms I'm having but no one seems to find anything wrong - I feel like a hypocondriac sometimes even though the problems are visible and the docs see them too - just don't have an answer (scientific proof is all they look for!!

Hang in there - you're body knows what works - hope the vertigo gets better!

Love ya,
Mars

[barbaranoela]

Maggie-------when my GI started me on ENTOCORT---it caused me (winthin just 3 dayz of taking it) NEUROLOGICAL PROBLEMs!!!!

I couldnt walk straight---had slurring speech---

When I called him all he said to me was STOP IMMEDIATELY!!! and if I hadnt felt better by the following day he wanted to see me---but thankfully I was back to my normal *witchy* self

Tell U it was quite scarey!!!!

Then my GP said U DO NOT START A NEW DRUG ON A PATIENT with the full dosage---it is a matter of seeing the effects it has before a dosage like that is INCREASED--
My GP and his group are all RENAL---

Maggs---and sorry that U got that *let down* feeling---

As we have said---*I been down that road too*

Hope issues get better---

luve Barbara

[tex]

Hi Maggie,

Wow! A lot happened during that visit, didn't it.

Now I'm not recommending Colazal, because I'm not aware of anyone on this board who has used it, but here is a little information about it, in case you ever decide you need to consider an alternative to Entocort, (IOW, in case the side effects should begin to outweigh the benefits):

Colazal is a 5-ASA drug, in the same group as Asacol, Pentasa, Rowasa, and one or two others. While it has the same active ingredient as Asacol, it does not contain the lactose ingredient that Asacol does, and it uses a different "encapsulation" method of delivery, that allows it to become activated only after it reaches the lower third of the small intestine, and the colon. Asacol and the others are also encapsulated, but Colazal utilizes a totally different mechanism for making itself available in the lower part of the digestive tract. IOW, many people with an IBD who cannot use Asacol, (or who get no benefits from it), find that they get good results from Colazal. Also, some people who have problems with Asacol are able to get good results with Pentasa.

It's very confusing the way that many doctors consider MC to be a disease that typically runs it's course in less than a year, and rarely returns. There are several research articles on the internet that verify that position. And yet, virtually every one who is a member of this board finds that claim to be absolutely ridiculous. Either those research projects were flawed, or we are an elite sub-group with chronic symptoms that require constant treatment. I would sure like to see some research directed at this apparent wide disparity between "the official medical position", and the reality of what happens in the real world.

Love,
Tex

[ErinD]

I am so sorry to hear about your appointment. I can understand your frustration It is amazing how many different opinions doctors have on this disease...

I hope you are feeling better soon.

[mini]

Hi Maggie

Sorry to read about your GI's appointment oh it is so frustrating trying to deal with the medical profession with this condition. Although I have to admit the last GI I saw stated on his report 'although this condition is usually self limiting, it can go on for many years'. I have not had any problems with the Entocort however, only into my 10 day after the preds.

One point of interest is you say about vertigo as soon as I read that alarm bells rang. About 2 years ago I started to get this problem (long before the Entocort) I have mentioned this a few times to my GP and get no response at all! Although it has improved over the last two years it is still present. Hence it would be interesting to hear when yours started etc.

Also thank you for your note on my first posting, aww that is sweet about your grandsons. We very, very rarely get snow in this part of England I remember the last time was about 12 years ago a slight flurry and all cleared in 2 hours. LOL my cuddles expression well thank you I will take that as a compliment.

[harvest_table]

Morning All,

Well it was quite a visit. Asked how I had been doing and I told him about the vertigo and he immediately said well that's it for the Entocort. Shocked me said I take 3 meds all with dizzy side effects and an ear doc telling me its the ear, so why the immediate stop of entocort. He said well you need to stop since it is a steriod to which I said only 10% and there is absolutely no way. Talked about Colosol (I think) a tablet that I could try and I said Entocort or new doctor.

Hey Maggie,

As you know, I also had some vertigo issues this last fall and have not taken any medications for about 3 years. So at least in my case, meds are not involved. I believe vertigo is part of my MC package.

I had taken Colozal for a very short period (think it is spelled that way). Take a look at my medical profile- I took it short term after Pred before Entocort and it made me sick enough not to want to take it.

Hang in there and thanks for the update. Sorry about these frustrations....you seem to be handling them well though.

Love,
Joanna

[JJ]

Oh Maggie....darn it anyway....I can't believe the ignorance of some of these docs. Thank goodness for this board and the info we have shared with each other.

Take Care...JJ